Monday, July 28, 2014

Days of Summer....

There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition, and of unspeakable love.

― Washington Irving

            It’s pouring out and the house is quiet. . . the two noisy ones are at summer school.  Thought it was  a good time to put some words to “paper”.  Marriela has advocated that I take up Vlogging.  I think not.  There aren’t a lot of pics of me out there and there sure as heck not going to be videos floating around the world of my mug talking with my irritating nasal voice.  Oh my.   So I’ll stick with the Blogging, which she completely disagrees with.  Sigh, sorry to disappoint sweet girl!

This was supposed to be the update following our incredible Make-A-Wish trip to the indoor water park.   Sergio became very sick and spent 8 days
Sick little man.
in the hospital instead.  But he defies the odds and the antibiotics, despite not
Sprinkler time!
working for many days, have successfully cleared the infection once again.  I asked his doctor the odds of saving his line, he said it was 50/50, but Sergio has won the 50/50 coin toss over 80% of the time, so he would never bet against him. 
J  That’s my boy!! If only we could put that good luck into something far more productive than saving central lines! 

Anyway, back to topic at hand.  We didn’t get to go on the trip.  We are looking at trying again the last week of August.  We started a new method of giving his Immunoglobulin treatment and so far it is going very well.  He is now getting it via little needles in his tummy and a pump pushes the IG into his tissues where it absorbed over the next week.  We repeat this weekly rather than going for one big dose IV each month. The IV method was causing severe reactions that were also resulting in hospitalizations so I didn’t think quality of life was being met the way it should be.  Praying this helps with infections AND decrease the reactions so we get all the positives and none of the negatives. 

The first fireworks the boys have seen.
The rest of the kids took the news of a delayed trip better than we anticipated, especially a certain little brown girl who doesn't handle change well at all!  I did cushion the blow by scheduling her Hawaiian themed birthday party for the local public pool.  This was a nice distraction and now we’ve been researching Luau themed birthday supplies on every site we can find.  Summer school, and the anticipation of several other fun things have helped create the distraction we needed. 

Thinking of making one of these for home!
Enjoying our turkey legs!
This past week we took four of the kids to the Renaissance Festival.  Tray, Cody and Marriela really loved it!!  Marriela got so much more from the shows than we anticipated.  Cody and Tray loved all the armor and other crazy outfits people looked just a tad too comfortable walking around in.  Joshua went to Casey’s Place Medical Respite where he decided he should keep them on their toes and started seizing badly at the park.  But they gave him his rescue meds and he pulled though and stayed the rest of the weekend.  He LOVES that place and it’s the only place he can go safely.  Sigh. 

This week we are leaving for four days to the Brian Bisgrove Home of Courage in Owasco, NY.  What an incredible gift for our family.  I’ve talked of this incredible place before, but please know this is really is the closest thing we’ve had to a relaxing family vacation in six years.  We did go for four days
Last fall at the Home of Courage
last summer to Lake George and had a great time!  But, it was intense, I was running 2 antibiotics for Nettie’s severe knee infection, 2 antibiotics for Sergio’s recent line infection and all of the other meds and IV stuff that is routine.  The Home of Courage is just relaxing.  There is no pressure to “go” anywhere.  Just hangout, fish, shoot bb guns, put together puzzles, cook out and get as close to “camping” as we can without risking the kids.  I am looking forward to it!!!

The week after that, Cody is going to a Ninjago Lego camp, then Tray leaves for a week for his Camp Hope with Heart near NYC and the week after, Joshua goes to his Camp Hole in the Woods camp for 4 days near Lake George.  THEN we hope to take the kids on the Make-A-Wish trip as Sergio will be suffering from severe cabin fever by that point!! 

Tray and Cody are very into “Zombies” and how to survive an apocalypse. I asked them to research the CDC site and find a list of 20 items they would need to take in an emergency to survive.  A few of their answers. . . brace yourself for the well thought out ideas. . . don’t be shocked if you didn’t think of some of these. . . ready??  A teddy bear, Bo and Mazzy (our dogs), a “blunt object”, toilet paper, a note to say good-bye to the family, food, a bandaid (just one apparently is all you need for a zombie bite), layers of clothes, a book to read, and the best. . . berries.  I’m pretty sure they both spelled batteries wrong,
A day at the park.
at least I’ll just hope that was their thinking.  Clearly they will not be surviving well for too long in the event we
need to really leave in an emergency.  There were some good answers (with some prodding) like their meds, a knife, some water, etc.  LOL  Marriela just said not to worry ‘cause we’re going to Heaven soon anyways. . . this is a running theme with her, should I be worried??  She has plans for my pictures, our house and my ashes!  LOL 

The kids are all doing well.  Tray is so healthy and strong and his last biopsy in June was perfect.  Cody has had almost no issues with his asthma and he is excelling at his Jui Jitsu.  Joshua has actually been doing very well relatively speaking.  He has about 3 seizures a day, mostly when he first falls asleep or early in the morning hours, or during naps.  But he is happy and well otherwise.  Nettie is doing very well and is always busy.  She comes over every other Sunday and next week is going to restart attending Church with her new worker (at her request).  I love her so much!  She will be going with us on the Make-A-Wish trip and she is very excited about that!  Marriela is doing well.  She is growing, healthy and mostly happy.  Recently however, we are dealing
Loving the pool!
with a lot of “anxiety issues” and an over focusing on recurrent worries.  Starting a very mild med to see if we can reign some of this in for her, as it really upsets her when she can’t “turn her brain off” on a worry.  She has to talk about it, share it and just overall obsess and it is very upsetting.  This results in tears and anger at her “brain” and the panic like symptoms she develops as she becomes upset, such a difficult cycle to break, and it hurts my heart to see her struggle with it so much.  But overall, her summer school has been great and she is so excited about her birthday party!  Trying to keep her focused on the things to come.  Sergio is
First days of summer
doing well.  When he’s not sick, he’s well.  He is going to summer school, and the gets a little water play in every day (more than he should, but he’s very resourceful!) 
Well, this is long enough for today.  Sending love and peace for a wonderful summer everyone.